Jordan Chere Allen was born on January 15, 2001 to John and Yvella Allen and big brother “Trey”. Jordan was the first granddaughter on both sides of the family. She is what we prayed for a baby girl. Jordan like all the other children with HH made this strange noise and we could not figure out what it was. We took her to the doctor and they could not figure what was wrong with her. She was under the care of one doctor and one day her mother switched doctors. The new doctor was looking over the other doctor’s notes and asked did the old doctor say anything to us about Jordan’s head measurements? All of Jordan’s measurements from her check-ups during her first year were all off the charts. The new doctor asked if she could do a CT Scan and then called a few days later and reported to us that she had a mass on the brain and we needed to get her to the hospital. A biopsy of the tumor was done and was sent to a specialist to determine what it was. At the same time, a shunt was placed in her head. The results came back and it was an HH tumor and basically we were told that it was to dangerous to operate because it was on the brain stem. This situation was a shock to us. We did not know what to do. We were told to take Jordan home and love her until God calls her home. We could just not settle for that. We took Jordan home and began to look for other options and another doctor to help us.
For about 5 years, we did a lot of research trying to find her some help. We had got Jordan an appointment at a hospital in Houston. We arrived at this doctor office and not even 5 minutes of being in the office, we were told that she was having laughing seizures. The doctor at this hospital had only done a handful of this type of surgery and once again we were faced with something that we were not prepared for. She was having laughing seizures and was going through precocious puberty. During this time things were not going so good but we manage and worked our way through it. She would have between 15-20 seizures a day. As she got older our lives were hit hard but we survived. Her mother lost her job of 12 ½ years. After Jordan’s mom was fired from her job she became a stay home mom. Monthly, we would take Jordan to Houston to see their doctors because they were more advanced than what we had closer to home. When we were home, Jordan’s mom started to go to school with Jordan. She would spend at least ½ day at school with Jordan. At school Jordan would give her teachers a hard time and would not cooperate with them. While at school half of the time she would be having seizures and the other half she would be in the corner asleep. Her teacher would make a pallet for her to sleep it off. If she was having too many seizures I would just take her home and let her sleep it off. At times I would have to inject her with a medicine that would stop the seizures. The medicine would stop the seizures instantly but later on the seizures would return.
Jordan was scheduled for surgery in December2007. December came and we were told by the insurance company that they wanted a 90 day notice for the surgery. We went round and round with the insurance company. Since we lived in Texas the insurance company did not want to pay the hospital in Arizona for the surgery. Daily we would be on the phone fighting with the insurance company. Finally on day #87 we received the phone call that she could have the surgery. Our prayers had been answered once again. On April 5, 2007, Jordan checked into the hospital for surgery. We had support from our family who was with us in Arizona for the surgery. On that morning of the surgery we all gathered for prayer with Jordan because “Prayer changes things.” When they rolled her off to surgery she started having a laughing seizure and that was the last seizure that she had.
The surgery was successful. The doctor was able to remove 95% of the tumor off of her brain. She went to recovery for a couple of days and then was dismissed from the hospital. We returned back home to San Antonio, Texas and began the healing process. It has been a long healing process but we are thankful for what has happened. When we returned home Jordan started some physical, occupational, and speech therapy to help her as she recovered. She returned to school and basically had to start all over. What she had learned in school before her surgery she could not remember. We decided for her to repeat the 1st grade and it was for the best for her. She stills has the rages and we cannot get that under control. We have tried several medicines and nothing is helping with the rages. We were told that the rages would stop but not with Jordan because she still has the rages. We are praying and hoping to get these rages under control.
Jordan is now in the 3rd grade at Northern Hills Elementary. She participates in the Special Olympics track and field, basketball and bowling where she has competed and won many awards. She is very involved in school, church and the community. She loves to sing and play sports. She belongs to New Mount Pleasant Baptist Church where she is in the youth choir and the contact person for her Sunday School class. In February 2011, she was named “Youth of the Year” at her church and what a special honor that was for her. Just recently she joined the Girl Scouts Troop #664 and she is proud to be a girl scout. This year January 15, 2011 Jordan turned 10 years old.
In the beginning when we found out that she had a HH tumor, we were told by a doctor that she only had 4 months to live and to take her home until God calls her home. Well, 9 years later Jordan is still with us by the Grace of God because prayer changes things. We are so thankful to the doctors and the hospital for what they have done to help her. One night her mom was on the computer and googled HH and this is how she found hopeforhh.org which has truly helped the family to understand what is going on with Jordan. We are so thankful for all of the information and encouraging words that we have received. For so long we have been in the dark about HH and it has been a blessing to join this group. There have been so many unanswered questions answered because of the emails that we receive from the web site.
This journey that we have been on has not been easy. You have your good days and your bad days. Having a child with HH has changed our lives because you constantly have to watch your child 24/7 and you have got to have patience. It is not easy at all but with prayer, love and support from our family and friends we are fighting our way through it. We were told that it would be a slow healing process and it has been 4 years (April 2011) and we are still amazed about our daughter Jordan. The road to recovery has not been easy but with God all things are possible.
